Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Sunday, March 13, 2011

NYT Grim Reading about the Margins of Citizenship

On March 12 the New York Times published a long article that reminded why the paper is read nationwide. Once in a while the NY Times publishes outstanding articles. Yesterday had one of those outstanding examples of first rate journalism. Here I refer to a long article by Danny Hakin, "At State-Run Homes, Abuse and Impunity". No new ground was broken in the article but it was shocking and gripping reading. A New York Time investigation over the past year revealed what many do not want to know much less acknowledge: there is wide spread abuse at group homes run by the State of New York. What sort of abuse? Residents of groups homes have been raped, beaten, taunted, and physically abused. The abusers are rarely if ever convicted of the abuse. State records show that of the 13,000 allegations of abuse in 2009 at state operated group homes fewer than 5% were ever referred to law enforcement. The people being abused are the most vulnerable--men and women with Down Syndrome, Autism, and cerebral palsy. Not much has changed since 1972 when Gerlado Rivera made a name for himself by filming the horrific conditions at Willowbrook Institution. The images were searing. A nationwide scandal resulted and the forced institutionalization of people with a host of disabilities slowly came to an end. In its place of large institutions that warehoused hundreds of people we now have a complex and diverse distributions of small group homes. To me, these are nothing more and nothing less than mini institutions. I am not convinced such group homes are better than the closed institutions that dot the rural landscape of New York. The abuse of large numbers of individuals housed in institutions has ended. In its place small scale and widely spread abuse exists.

I urge readers to look at the NY TImes article. It is grim reading. It should make one angry--deeply angry that those least able to protect themselves are being abused. The abuses are nothing short of horrific. It makes one question humanity. It also made me upset we as Americans have never really had a national dialogue about how to care for people with profound cognitive and physical deficits. If the article in question posses more than a grain of truth we as a society are failing--a failure that dates back a century or more. When I read the story I was moved to tears. How can people abuse others and live with themselves. It is nothing short of evil. But evil lurks in the hearts of many. To counteract such evil we need to openly discuss how we should care for people who cannot care for themselves. I would argue our society has the moral responsibility to do this. I have little faith the courts or politicians can do anything to ameliorate the situation unless a great number of citizens all rise in protest. I do not see this happening either. Why am I so pessimistic? I have read too much about ugly laws, institutionalization, legal abuses, and cases such as Buck v Bell. When I read the story my first thought was that in a horrible way the article highlights much of what Allison C. Carey wrote in her insightful and important book On the Margins of Citizenship. People with cognitive disabilities have historically been marginalized and excluded. Segregation remains the norm for children and adults with profound cognitive and physical impairment. Sure we have group homes in communities but that does not mean the residents are welcome. I live near two group homes and I have seen these people escorted to the local super market in a van. Sadly but hardly a shock to me, the supermarket empties out in world record time when group home residents appear. There is no effort to hide the bias or distinct and palatable level of discomfort. This is an indictment on us not the residents. These people inalienable civil rights are violated on a regular basis. So I reiterate, not much has changed since 1972. But I would go farther, not much has changed since 1927and the notorious Buck v Bell decision written by none other than the widely praised jurist Oliver Wendell Holmes. The denial of Carrie Buck's rights are a low point int he history of jurisprudence. Holmes gave support to the state's authority to deny the most basic civil rights including the rights of privacy, parenthood, and bodily integrity to people with cognitive disabilities. The frightening decision is worth re-reading and in part Holmes wrote:

We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for the lesser sacrifices, often not felt to be such by those concerned, in order to prevent our being swamped with incompetence. It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or let them starve for imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the fallopian tubes... Three generations of imbeciles are enough.

While shocking to read in retrospect, are we really doing a better job caring for people with cognitive and physical disabilities today? I would argue the NY Times article provided a lurid and resounding no. I frankly cannot stomach the details provided by the NY Times. It is just too horrible for me to contemplate. Instead I rail against American society that tolerates such abuse and has done so for decades. The violation of the basic rights of a group of people is unacceptable. All agree with this sentiment but I do not see measurable social change. We need to understand such marginalization and consequent abuse has not substantially changed since 1927. In every era ideas about people with profound cognitive and physical disabilities have been put forth, solutions offered and changes made. But none of this gets to the core issue: that these people have inalienable rights that must be respected. Any discussion must be framed within this larger context.

4 comments:

thank you for the heads up on this article. I am very concerned about what has been going on, especially now with massive budget cuts here in Cali. They just cute all funding for adult day programs, saying they will "reorganize" the system to "provide better service." Right.

I saw this article while reading my Sunday New York Times. I agree it is truly horrifying & deeply disturbing. Clearly, someone must stand up & do something to stop the abuse of the innocents who can't speak up for themselves. This issue reminds me of “the silent epidemic”- domestic violence. In both cases,defenseless people who've been stripped of power are abused by people in positions of authority. It has to stop. As a society, we must do what we should have learned as 5 year olds- play nicely, share, & respect others who are different from ourselves.

Terena, Where I wonder is the outrage? States keep cutting back services and yet there are no effective protests. Cait, How does a man rape an adult woman with a profound cognitive impairment and live himself? How does any person abuse another and live with themself? People sometimes are a mystery to me. I think the only answer in terms of group homes is to incorporate them into the community and end social isolation. Is that not what men do who abuse their spouse? Socially isolate them. Abuse of all types is just wrong and cannot be tolerated.

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